Around-The-World Trip Part I

We have had something brewing for a long time – over three years now. Something big. It’s easy for me to remember how long it’s been because the idea came to me when I was pregnant with Penelope who turns three this week. When I texted Dan at work to tell him I had one of my BIG ideas, I’m sure he was bracing himself. When I get a big idea in my head, it’s hard to change my mind. Later that evening, I approached the subject lightly, after all, I didn’t want to come on too strong and ruin my chances of Dan accepting my big idea. “What about,” I began, “if we downsized and lived in a cheaper house, and then used the money we made on the sale of our home to travel around the world?” I tried not to sound too hopeful. I tried to tame the bubbling excitement rising from my throat. “Yeah,” Dan said, seemingly unfazed, “that could work.”

And so, what began as an idea over three years ago shifted into shape. The first step, we both agreed, was to sell our home, “our Castle on the Hill” as I sometimes refer to it. That house was on a lovely, extremely private cul-de-sac, surrounded by tall trees and lush greenery. We even owned a section of the common greenspace with our neighbours. Yet, we had rushed into it.  We had some fantastic neighbours and a coveted address in town, but…I felt somewhat trapped. After paying our mortgage, we didn’t have any extra money to do much of anything else. We were house poor. I eventually wanted a pool in our backyard, but our Castle on the Hill was set into a steep hill. There was zero chance of a pool ever happening. From a practical standpoint, a kitchen looking over the backyard is best with small children; you can let them out and watch them play while cooking and preparing the many meals and snacks small kids require. Our kitchen looked onto our neighbour’s yard, which offered a picturesque view but was useless otherwise. The best place to play outside was on our large side deck on the other side of the house, away from the kitchen. Unfortunately, there was a pond on that side deck, and so I could never leave my young children to pop in and grab something we inevitably needed. Going outside became a production, and if you know me, and my love for running, cycling, exploring and hiking the outdoors, this was not a good combination. I also questioned the value in owning a bigger home. I began to resent the cleaning and maintenance that often fell on my shoulders as the one who was home. The way I saw it: bigger house equals more to take care of. I wanted less. So you see, there was more than one reason for us to move, and travel made the whole idea of moving so much more glamorous and appealing. This is classic Adelle – I’m very “treat” motivated. I’ll do just about anything, including moving with a newborn, if you dangle the right carrot.

I make it sound like we made the decision to uproot our lives and travel the world in an instant – we did and we didn’t. We discussed the matter for months, spent time looking at other houses and considering our options, but Dan and I both tend to make up our minds quickly when something feels right, and I think we both knew right away that travelling, and spending an extended period of time together as a family, was something we both wanted to do.

I continued to dream big, imaging us boarding an around-the-world cruise as a family of five, voyaging the oceans of the world for over a hundred days, seeing as many countries as possible. That was our original plan, and we repeated the mantra many times over, let’s see as many countries as possible! We imagined we might be able to plan our trip for when our baby-to-be was eighteen months old, only two years away from the inception of our plan. We were over-ambitious, and a big dose of reality would help to sort things out.

Our house did sell – not for as much money as we wanted or hoped for, but the first phase of our plan was complete. We visited my friend’s mom, a cruise specialist and learned those hundred day cruises would cost in the $200k range for a family of five, and that, well, not many families of five did this kind of trip, but we’d potentially have a lot of loving grandparents to help out! I wasn’t ready to admit it yet, but that kind of disposable income was unfathomable and downright impossible – short of selling our house and not purchasing another. After deliberating over that idea, we ruled it out. If we wanted to cruise, we would have to shorten our trip, though I wasn’t ready to admit that either.

In the meantime, I gave birth to our beautiful baby girl in the house we would soon move out of. We knew we wanted to plan a big trip, but we didn’t know exactly when or where. We would wait for the cruise lines to come out with their itineraries for the next year and see where that took us, and what we could piece together.

It’s not that the trip really ever slipped our minds – more like life took over. We found our new home (thanks Alexis!), Dan and I packed up our house while caring for a five and three year old, plus a newborn, and then moved into our new home when Penelope was one month old. Why do big life changes often happen at the same time as new babes? What is it about new life, and its inverse – the loss of life, that propels us forward?

The girls started at the French school around the corner and we began to settle into this chosen life. There was only one thing Dan couldn’t stand about our new house, and that was the kitchen. Fun fact about downsizing: you need to get rid of some of your stuff! There was nowhere to put our pots and pans in our new kitchen, so we had a Costco fold-out table permanently on display by our back sliding door to store our kitchen wares. After some minor disagreements, we came to terms on spending the money the following summer to renovate our kitchen, which was our main living space – but that that would be it. The rest of the money we made from downsizing would go into our trip. We thought we could do our kitchen on the cheap, maybe IKEA, or some combination of quick fixes. I threw out a random budget of $7000 max, but was dismayed when we started researching actual costs for kitchens we liked. We spent over four times that in the end, though I have to say Dan was right and I love having a functional new kitchen. But I digress.

We hadn’t heard from our travel agent in a while, and time was slipping away. What about those cruises? Weren’t any coming up? After reaching out a few times, and not hearing back from her, I decided to reach out to another agent who got on it right away, pulling together a variety of cruises that might peak our interest. The problem was, we didn’t want a fourteen-day Japan cruise. We wanted to see the world! We continued to operate under the mantra, let’s see as many countries as possible! We worked with this new travel agent and found a wonderful cruise encompassing a beautiful cross-section of the world. The price was still an issue, but we’d figure it out. By this time, a year had passed since we’d moved and it looked like our baby would be two and a half by the time we would be going on our trip.

We thought we were all set. The travel agent said prices for the cruise weren’t posted yet, but as soon as they were, she’d let us know and we could book! I was euphoric, hopeful, and impatient. We leaked the news to a few friends and neighbours about our impending big trip. Then the unthinkable happened. As one of Dan’s work colleagues says to his children when they’re pouting, “There are Big Deals, and there are Little Deals. Is this a Big Deal or a Little Deal?” For us, the Little Deal was that the cruise we wanted ended up being fully booked over a year in advance – our agent hadn’t known the prices weren’t showing up because all options were already taken. We had been waiting an entire year, wasting time – for nothing. Then, the Big Deal. This kind, vivacious woman in her forties whom I had been talking to over the phone, explaining our dreams, called to tell me she would be on leave, and that a friend would be taking over her clients for the time being. A month later, I saw on Facebook that she had passed away. Brain cancer. She left behind a husband and a nine year old son.

Her passing was a terrible reminder that you just never know, to hug your loved ones close – all those clichés – but it also spurred me on to BOOK THAT TRIP TODAY realizing tomorrow may never come. For her, it didn’t. As life happened around us, and our money pile continued to dwindle, I decided to take matters into my own hands.

I got this idea from the movie Tangled – the Disney version of Rapunzel – that it would be incredible to see lantern lights released into the sky. When I realized the scene that plays out in Tangled is a real-life festival in Thailand, I had to see it. I thought the kids would love it, and that that would be a great place to visit on our trip. I now had a concrete destination in mind. While cruising had seemed like the easiest option for travelling with three small children, the realities and expense of booking the perfect cruise were sinking in. I questioned our mantra of, let’s see as many countries as possible! What was this, a race? Wasn’t it more important to actually see and experience the countries that we visited? I had been doing some travelling on my own and with Dan in the meantime, and started to realize my priorities had shifted. More did not necessarily equal better. Quality over quantity. Maybe that’s become my new mantra. Let’s enjoy our life together. I asked, what can we do that is doable and enjoyable for us and our three small kids?

Thailand was the spark that lit the fire for our new plan. We would take to the skies.

A Star is Born, by Emily Boycott

Editor’s Note:  Emily and I sat together in a local café as she wrote her story.  We brainstormed ideas together, then as it came time to write the first words, I waited.  Emily looked to me, to see how I wanted to start her story, but I told her I wanted the words to be her own.  Once she got started, “I am a person…” she didn’t stop.  Ideas flowed, and I was merely the conduit, typing the words and making them appear on the screen.  Emily is solely responsible for so clearly and eloquently bringing her life into focus.

Hi, my name is Emily and I am a person. I am a person born with Down syndrome. I was eight pounds, eight ounces when I was born at Guelph Hospital. When I came out, my mom didn’t know I had Down syndrome. She knew when she took me home and somebody told her afterwards. I couldn’t crawl, I needed help. My sister Beckie held the towel under my tummy and my mom moved my knees, pushing me along kind of, moving my arms and legs, “Right! Left! Right! Left!” I had a big belly and a big family. Counting me, there were five kids: my oldest sister Rebecca – who we call Beckie – my brother Matt, my sister Amy, me, and my youngest brother Mark. Mark is the tallest and I’m the smallest in the family. He’s 6’4” and I’m 5’4”.

My dad was thirty-five and my mom was thirty-four when she had me. My parents were one of the founding families of the Halton Down Syndrome Association (HDSA). When I was a baby, my mom got together with my friend Allan’s mom. Allan and I played together as babies while our moms talked and had tea. We are still friends today through HDSA’s Graduate Group. The Graduate Group is people with Down syndrome who’ve graduated from high school. I am now thirty-six years old.

I have made friends all over the world through Special Olympics. When I was sixteen, my mom found out about rhythmic gymnastics. I loved dancing in my room and with my friends, so rhythmic gymnastics seemed like the perfect fit. My mom became my coach, and my dad also took me to swimming through Special Olympics. I was fifteen when I swam for the Oakville Marlins, which is run by Linda Hickson, my friend Bill Hickson’s mom. He’s another one of my good friends. I dated Bill when I was fifteen, but not anymore. I have friends I made over the past twenty years through participating in swimming, rhythmic gymnastics, cheerleading, figure skating – and they are still my best friends. Special Olympics gave me the gift of life-long friendships.

Through my participation in sports and Special Olympics, I’ve been to so many places like Athens, Greece; Shanghai, China; Los Angeles, United States; London, England; and several locations across Canada, like Ottawa, Ontario; Vancouver, British Columbia and Antigonish, Nova Scotia. I’m a world traveler. My dad always says I’m his ticket to traveling. I have over one hundred and seventy-seven medals that I’ve won over the last twenty years, many of them while representing Canada at the International level. For my athletic accomplishments, in June 2019 I was inducted into the Halton Hills Sports Hall of Fame after being nominated by my friends Christine Arbic and Emily Arbic-Cohen. Thank you to them, this was a great honour.

Now I’m going to talk a bit about my home life and things that I do at home. There’s a lot! I do inside stuff and outdoor stuff. Inside, I like my room. I like to watch TV and DVDs. I like dancing, music, reading and writing stories. I like going on my iPad and Facetiming my sister, Amy. This is my chance to see my nephew, Reece, and my niece, Grace, because they live in Northern Ireland. I’ve also been there to visit them multiple times. I always have supper with mom and dad in the living room and we watch Heartland – a TV show about horses. I love horses! I ride horses at Foxfield Stables and I also volunteer there cleaning out the horses’ bowls and sweeping hay out of the hallway. I would love to go horseback riding on the beach! My friend Adelle and I are making plans.

My outdoor life. My family lives in the woods like the Cullen family from Twilight. In the summertime, we have a trampoline and a pool outside. I swim in the pool with my mermaid tail that my sister Amy and her family got for me. My mom, my dad and I like to go for walks, along with my other nieces and nephews when my parents are babysitting them. We have a trail in the woods we go on. We go bike riding and on nature walks. We have a volleyball net and have campfires on special summer nights. In the wintertime, we go cross-country skiing, and skating out on our pond. Sometimes we go downhill skiing, but we have to drive to those places. We have a snowmobile at my house, and I go on that with my dad. I would love to drive that on my own, but I have to get my licence first. I think I hit a tree once. I’m planning to get my licence, but I haven’t yet. I’d like to get my boating licence too because we have a Sea-Doo at my cottage. When I drive those two things, I need a parent with me in case anything happens to me. My pool that I have at home, I can’t go in it if my parents aren’t home. I can’t go in it late at night, like midnight – because I’m supposed to be sleeping – or if I’m home alone in the afternoon.

In July 2019, I will be my cousin Mariska’s Maid of Honour. I do a lot of stuff with my cousin Mariska. I have another cousin, Ainsley, and we always go out for sushi. I do a lot with Mariska and Ainsley, as well as with my brothers and sisters and their families. We are a close-knit family. We are also a hockey, Christian family. I got baptized when I was fifteen years old and we love the Toronto Maple Leafs. I met Jake Gardiner, Toronto Maple Leaf in Vancouver at a Special Olympics event. Then I met him at a pub in Toronto at another S.O. event, and my family and friends and I were asking him questions about hockey. I met him for a third time at a S.O. gala with his friend Morgan Rielly. I have a picture with them. I like meeting celebrities and I’ve met many, like singer Avril Lavigne, Twitch from So You Think You Can Dance, actress Ashley Olsen, and actor Arnold Schwarzenegger. “I’ll be back!” is one of his famous lines, and “It’s not a tumor!” is a line from the movie Kindergarten Cop that makes me laugh. I think he had a hangover – LOL.

Where I see myself in five to ten years — I would be in fashion. I love fashion and celebrities. And dancing at my own dance studio. I would love to tell celebrities what to wear. I have been on the red carpet in L.A. and I’d like to do that again. And I would also like to be a model or an actress because I like to pose in pictures. That’s where I see myself. I would like to be a hair stylist. I also have many hairstyles in my head I would like to do for other people, like for proms or weddings, and for famous people.

My advice for people with Down syndrome is to follow your dreams and make them happen, like in the song A Star is Born with Lady Gaga and Bradley Cooper. That’s what we are, a star that is born.

Emily Boycott is an accomplished athlete, decorated Special Olympic champion, world traveler, role model and public speaker.  In June 2019, she was the first person with a disability to be inducted into the Halton Hills Sports Hall of Fame.

My First Triathlon Experience at Guelph Lake I

Hand shielding my face from the sun, I stood looking out over the water at the point where gentle waves lapped the shore. Seven hundred and fifty metres looks like a long way out, let me tell you, especially when you’ve been practicing twenty-five meter swim lengths in the pool. I looked for a sympathetic gaze among the small crowd gathered at the beach. “The swim is daunting, isn’t it?” I threw the comment at a couple nearby. “Is it?” the man challenged me. No sympathy here. It’s race day, and everyone has their game face on.

I would be lying if I lead you to believe Guelph Lake was my first of first triathlons. Last year, I participated in Milton’s Try-A-Tri early on in the season, a respectable 250m swim, 10km bike ride, and 2.5km run. I rode a mountain bike and got in the water with little to no swim training, comforting and consoling myself with the notion beforehand that I was “an athlete” and therefore could complete the Try-A-Tri “no problem”. Also, haven’t we all been bike riding since childhood? And swimming! I love swimming! In pools and laying out to dry on the deck. These thoughts were delusional.

Swimming and cycling for pleasure are not at all the same thing as the activity performed in the pursuit of sport. Akin to the way walking and running are not the same thing. And though I was training for a marathon, and considered myself in decent shape, that short baby triathlon distance killed me. The swim was a complete disaster. I tried every stroke imaginable and came out of the water gasping for breath. The bike ride was equally traumatizing, as every single person passed me by, throwing their dust in my wake. And the run – my area of expertise – felt like a flop. My legs were bowls of jello filled with lead, and by the time the “bricks” feeling passed, the race was over. I was determined that my next triathlon experience should be different. After a sprained wrist in a bike accident debacle, I took the rest of last season off, choosing instead to focus the rest of the summer on marathon training, which took place in the fall.

With my marathon complete, I hummed and hawed. To run another marathon, or get back to triathlon training? I didn’t feel like I could pull off both. Upon reflection, I felt like triathlons and I had some unfinished business. I couldn’t let one fall off my bike get the better of me, and so I leaned back in the direction of multi-disciplinary training. My initial plan was to kick off the season with a Try-A-Tri, and work up to a Sprint Triathlon, but the race dates and our family’s plans conspired to push me right off the bat: I would compete in Guelph Lake I Sprint Triathlon.

With close to five hundred competitors in the Sprint Triathlon, as well as a relay and duathlon that run concurrently, it’s a busy and popular race. In planning ahead, I decided I would arrive an hour and a half before my 9:00 am race time. This would give me ample time to park, use the bathroom, set up my space in the transition area and register, orient myself as to the course layout, check my bike and take it out for a jaunt, go for a short jog, get my wetsuit on and last, but not least, test out the water and swim a few strokes. An hour and a half ended up being the exact perfect amount of time for me to accomplish these steps.

But let’s back up a step! How did I get to race day? As a person who’s been an athlete and competitor in some form of sport since I was a kid in the single digits, here is what I find works well for me.

Weight training. One day a week, I attend Body Pump at Goodlife Fitness. It’s a one hour class and you cover every muscle group. When I let this class go because I found the training to be too much when marathon training, I regretted it. Strength training appears to be quite important to my fitness regime.

Yoga. I try to make it to Body Flow at Goodlife every week. I find the combination of stretching and strengthening makes a huge difference in how I feel, and helps soothe achy muscles.

Running. While running is taking a back seat in my triathlon training, I’m still running three days a week on average. One of those runs is a long run, which for the purposes of my training now, is about 10km give or take a few. I was also fitting in two other 5 – 6km runs at a regular or tempo pace (a bit faster than normal, but not race pace), but I will be exchanging one of these for an interval workout in the space between now and my next triathlon. I’d like to get out running some sprints on a track while it’s nicer out. Speed workouts and interval training are what make you faster. You run faster but actually running faster. Two years ago, I placed third in a 5km road race by applying this principal of running faster to be faster. All winter long, I ran intervals on our treadmill and progressively increased my speed and sustained interval periods to longer and faster, building to a speedier pace than I’d ever run before. Translating that speed to outside was difficult, but manageable with practice, time and sustained effort.

In addition to running, I’ve had to put a major focus on swimming in the past year and with the nicer weather, getting out to go cycling as well. As I’ve really only been biking with the warmer weather, though, in retrospect, I probably should have been doing spin classes all winter, and it isn’t surprising that the cycle portion ended up being my weakest leg of the triathlon. On the bike is where I need to focus before my next triathlon, but I’m getting ahead of myself.

Swimming. I have been swimming all year, early Saturday mornings. In doing so, I’ve worked up to fifty laps. For my race, I needed to be able to swim the distance of thirty laps, but open water is a different beast.

Cycling. I try to get in a long bike ride with a friend on the weekend, and another shorter bike ride or swim through the week. As the cycle portion for this race was 19km, I was aiming for 25km rides as a shorter training distance and closer to 35km for longer. I am going to continue to extend these distances.

And last, but definitely not least, probably the most important aspect of my training is my rest day. There is no way I could sustain the amount of exercise I do without taking at least one day off. When marathon training, I scheduled two.

Sprint Triathlon distances are not all created equally. While Guelph Lake I is 750m swim, 19km bike, 5km run, the next race I’m planning to attend in Orillia has the Sprint distances at 750m swim, 33km bike and 7km run. That’s a 40 percent increase in the bike and run! I’m going to have to step up my bike training.

So here’s how the race played out.

My swim training paid off. I felt comfortable in the water, no matter how much of it I swallowed. Picture a mass of writhing salmon headed upstream, and that was what the experience felt like. Bodies flailing around me. On the plus side, you forget you’re in the middle of the lake. The swim is set up as a trapezoid. Out, across and then back. The swim across, parallel to the shore line, felt relatively short compared to the out and back. At some point on the way back, my arms were numb with fatigue. My hands and feet were numb from the cold. The water was a cool sixty-five degrees Fahrenheit. Landing ashore was a godsend. Then I was off, running up a hill to get back to the transition area, trying to strip off half my wet suit in the process, and breathing like a fish out of water.

Next the bike. DO NOT FORGET: helmet on and clipped before you even think about touching that bike! I later told Dan that I found the cycling section to be the easiest, though it is comparatively the longest section of the race. While the swim took me 19 minutes, the bike lasted for 44 minutes. Dan, ever my biggest supporter and toughest coach, gave it to me straight, “That’s because you weren’t pushing hard enough.” He’s probably right. Though I was working hard, there’s no doubt I have a thing or two to learn about how to cycle more efficiently. One step I can implement is to wear my bike shoes, which are clip in, instead of my running shoes. While wearing running shoes saves time in the transition zone because you don’t need to change shoes, bike shoes have their advantage. Instead of working to pull the pedal upwards, the bike shoes will do that for me, therefore using less of my energy and making my stride on the bike smoother (and silkier too, I imagine, especially if this was a hair commercial.)

Though I wasn’t super-fast, I felt strong on the bike, and it helped that I saw my cheering squad, my adorable little family, standing around the first bend. If that doesn’t give you a boost, I don’t know what will. Well, okay – besides training.

With the bike portion over with, only the run remained. As I used my Garmin watch in triathlon mode, it only showed my overall race time (and now was not the time to be fiddling with it), so I had no idea what my pace was, I just pushed myself to run as fast as I could at a jogging pace. The run portion is where endurance training pays off. But man, was it tough. Five kilometers is normally a comfortable distance for me. If you told me to get up and run 5km right now, I could (though I might ask you to leave), but as soon as you put some speed behind it, and a bike ride, and a swim, the Triathlon run feels almost like a new sport.

For starters, your legs will be unnaturally heavy from the bike, and I also had the unpleasant sensation of a stomach cramp. I felt irritable, like I needed a good stretch or – you know that feeling when you get restless legs? I had some of that going on, too. Eventually, my lungs and legs were burning. Truth be told, I was annoyed by the amount of effort this run was costing me. This is the curse of playing favourites: mistaking your preferred leg of the race for being the easiest. Not the same thing! It may be the lesser of three evils, but it’s evil all the same! Nevertheless, and despite my gripping, I was happy afterwards with my time of twenty-six minutes. And of course, I pulled out my signature move, and ran a hard sprint at the end and ended up passing at least five people. The crowd went wild, “STRONG FINISH!!!!” they screamed in excitement from somewhere beside me. When I sprint at the end, I know I gave it everything I have.

Completing the Sprint Triathlon was anything but easy. And though writing about it a few days later is making me feel exhausted all over again (partially because I still am), I had so much fun and am excited to complete another one!

In case you’re wondering, in terms of the burn, the Sprint came nowhere near the exertion it takes to complete a marathon, which makes total sense. Compare the hour and a half the Triathlon took me to the four and a half hours spent running my first marathon and it’s a no-brainer. I would rate racing a half marathon as being more demanding on my body than the triathlon felt as well, as a point of comparison, which also takes closer to two hours.

What it comes down to is this: how difficult you find your first triathlon will completely depend on your level of training and preparation going into it.

Best of luck, and to all the triathletes out there: have a great season!

 

Rage

The day started off innocently enough. I got up early, answered a few emails. Dan and I were chit chatting in bed, neither of us ready to commit to fully waking up. I finally decided to get dressed, and started pulling through the clean laundry basket looking for a particular pair of shorts. When I couldn’t find them, I felt a tinge of annoyance, but – no big deal – I’d fold all the laundry and they’d be sure to turn up. Thirty minutes later, with the weekend laundry now folded and put away, there’s no sign of the black shorts I’m looking for. I’m questioning Dan, has he seen them? Could they be in one of his dresser drawers, what about the girls’ room?

I’m pulling out stacks of pants from my closet, emptying my drawers, acting frantic and growing frustrated.

Dan lovingly attempts to sympathize. “That really sucks. Remember when I lost my raincoat?” I do remember when he lost his raincoat, and the point he was trying to make was that it eventually turned up, but that was months later when the idea of checking his golf bag in the garage finally occurred to him. I clearly didn’t have months to waste! Why would he even bring that up? Why doesn’t he get out of bed and help with folding the laundry and cleaning up this messy house so I can find things. That would be helpful.

I traipse down the basement steps to the laundry room and search the girls’ dressers – nothing. I look through empty laundry baskets, and behind chests on the floor. I’m literally down on my hands and knees crawling around. For some reason, I can’t let this go. I’m losing it. Clearly the problem is we have too much stuff, piles of things everywhere and I need to prove I’m still in control by finding this one thing.

There’s a neatly organized pile of Ariel’s socks and underwear on the bed that I have sorted, and while I jet back and forth putting away the girl’s other clothes, I ask Ariel to please put away the small pile. She makes a half-hearted attempt to scoop it up with one arm, and the contents spill out onto the floor. We laugh, but then when I come back in the room and see her pile, the one she was supposed to have put away, placed back on the bed instead of in her drawer, I tell her to get it done – all the laughter drained from my voice.

If I could have paused here for a minute or two to consider I’ve been up since 6:00 am, it’s now past 8:00 am and I haven’t eaten (a major faux-pas and contributor to my mood) then maybe the scene that happens next could have played out differently or at least been less predictable.

On my way down to the basement, I pass a rogue elastic – Ariel’s hair elastic – so I call to her to please pick it up and put it away. We make eye contact, as though that seals the deal, but when I come back upstairs the elastic is still there. As I stare at the elastic on the step, out of place and glaring at me, I snap.

“ARIEL PURDHAM GET OVER HERE AND PICK UP THIS ELASTIC RIGHT NOW! AND CLEAN YOUR ROOM – IT BETTER BE SPARKLING!!!”

I’m raging. I rattle a toddler-sized plastic Ikea chair against the floor for effect, like a chimp making an aggressive display.

Ariel stares at me wide-eyed. She sits immovable at the kitchen table, looking at me.

“GO! NOW!”

I storm upstairs and out of view, planning to tear through every single one of my drawers until I find my black shorts. I yank open the first drawer within reach – my pyjama drawer – and there are the black shorts, sitting plain as day on top of the pile. I was the one to have put them there the night before, mistaking them for pyjama bottoms. I silently pulled the shorts on, still brooding, and went into the bathroom to splash water on my face. As I leaned over the sink and looked myself in the mirror, the idea hit me. Rage in all of its forms: choosing rage, being rage, feeling rage is “I don’t care.” Rage is I don’t care. Love, on the other hand, is I do care, let’s figure this out together; love is acceptance and patience. Love is “I care.”

As soon as the realization set in, my anger and frustration melted away, because I do care.

I went to Ariel and apologized. She hadn’t made things easier on me, but there were a million other ways I could have handled the jobs I needed her to do that didn’t involve yelling and raging.

Love is choosing the hard way. Love is putting in the work.

It’s obvious to me (especially now that my lost thing is found, and I’m no longer tired or hungry) that I was projecting my rage onto Ariel, but I couldn’t think about that in the moment. Rage is blinding and all-consuming, and rage doesn’t care.

I remember hosting a dinner party once with two other couples and the discussion somehow shifted to the wives’ dispositions. My friend’s husband spoke up, “Oh, she rages!” he said of his wife, then proceeded to tell us a story of his wife throwing something down a staircase. I didn’t know if she would want to kill him later for saying that or not. I did know I would be mortified if Dan relayed stories of my outbursts. I didn’t speak up and admit that I also experience rage, but I should have. There’s a perception of women who nag or get angry as being – insert derogatory name for female dog or comparable here – but the truth is, as human beings, we all experience anger. Anger is okay. It’s rage – blowing the roof off the house – that isn’t okay. Rage is destructive. But anger? Women are allowed to be upset, and sometimes we should be. Often, we should be. Men are allowed to be angry, too. But rage over losing a pair of shorts? Come on, not worth the emotional anguish. Time instead to take a deep breath, think about what’s really causing stress, and get on with the day.

Good Reasons to Get Hard Core (or hard cover) About Reading

There’s a well-known reading scenario, source unknown, that has been passed around from teacher to teacher, then parent to parent, about the impact of daily reading on students and our children called, Why Can’t I Skip My Twenty Minutes of Reading Tonight?

The mysterious author suggests, “Let’s figure it out – mathematically!”

Student A reads 20 minutes a night of every week;
Student B reads only 4 minutes a night…or not at all!

Step 1: Multiply minutes a night x 5 times each week.

Student A reads 20 min. x 5 times a week = 100 min./week
Student B reads 4 minutes x 5 times a week = 20 minutes

Step 2: Multiply minutes a week x 4 weeks each month.

Student A reads 400 minutes a month.
Student B reads 80 minutes a month.

Step 3: Multiply minutes a month x 9 months/school year.

I think you get the gist of where this is going, but essentially, by the end of grade 6, if Student A and Student B maintain the same reading habits, Student A will have read the equivalent of 60 whole school days and Student B will have read the equivalent of only 12 school days.

One would expect the gap of information retained will have widened considerably and so, undoubtedly, will school performance. How do you think Student B will feel about him/herself as a student?

Some (more) questions to ponder:

Which student would you expect to read better?
Which student would you expect to know more?
Which student would you expect to write better?
Which student would you expect to have a better vocabulary?
Which student would you expect to be more successful in school…and in life?

Again, I want to emphasize I did not come up with this formula, but I find it impactful and worthy of spreading. When I shared this piece with Ariel, her eyes grew wide and she started saying, “la la la” to drown out the noise of my insistence. She was making it clear she will read on her terms, and that’s fine. Maybe you feel the same way.

If that wasn’t enough to sway you to make time for book reading in your life – let’s say you think you’re off the hook because you’re an adult who already knows how to read – let me share the results of some pretty compelling new research that I came across in Emma Charlton’s piece, 5 Reasons Why Reading Books is Good for You. And she’s talking about books in the flesh, not just magazines, newspapers, ebooks, audiobooks, podcasts or other online reading (though don’t abandon these worthy pursuits!)

According to a recent Yale University study, people who read books live two years longer, on average, than those who don’t, even when controlling for gender, wealth, education and health. The researchers explained that deep reading promotes emotional intelligence and empathy – cognitive processes that can lead to a greater chance of survival.

Want to sound smarter?

In addition to improving your emotional intelligence and empathy, according to an Oxford University Press Report, not surprisingly reading books also broadens your vocabulary.

If you want to live longer and stave off brain damage, exercising your mind is a key component of mental health. According to the Alzheimer’s Society, “Keeping your mind active is likely to reduce your risk of dementia. Regularly challenging yourself mentally seems to build up the brain’s ability to cope with disease.” Regularly engaging in active reading of challenging books is listed as an excellent activity to stimulate your brain.

A clear mind, a varied tongue and a longer life – what’s not to love? We haven’t even factored in the learning and entertainment factor! Book reading is good for you and the life of a reader is a life well lived. End of story.

Gra’ma Valley Says…by Valerie Hennell

(The following is an excerpt from Snapshot of a Soul Place in the land of special needs, an illustrated memoir written and illustrated by Kari Burk celebrating 25 years with her daughter Mielle who has Down syndrome. The book is a labour of love edited and curated by Mielle’s grandmother, Valerie Hennell, aka Gra’ma Valley.

Kari says:

Valley is Mielle’s grandmother by marriage and by choice. Her interest in my life as an artist and the mother of a person with Down syndrome is the foundation for Snapshot of a Soul Place.

When we feel support and encouragement from someone who recognizes what can be grown in the fertile ground of our person, we can begin to get down to the soulful work that is beneficial to both self and others.

Valley’s confident awareness that we would travel both the deep dark and bright light places kept our book project on wheels and rolling.

Gra’ma Valley says:

“My connection with Mielle did not come quickly or easily. At first I was startled by her honesty and unfettered laughter. It took years for me to find a comfortable place with this guileless being who welcomes me despite my awkwardness.

Then one day she invited me into her room – her sanctuary – and we began communicating in a way that wasn’t about words as much as intuition and trust. That’s when I started to understand that my clanking self-protective defensiveness is a kind of disability.

Mielle always has new insights to teach me. One day walking along the beach she looked up at me and howled ‘Valley, RELAX!’

Words to live by, Mielle!”

Writer, producer, publisher and poet, Valerie Hennell conjures projects for page, stage, CD and media. She has a Master’s degree in Creative Writing from the University of British Columbia where she launched a career that has spanned fifty years and ten countries. Her lyrics are sung by many; her recordings have been honoured with four Juno nominations, Parents’ Choice, NAPPA Gold and Canadian Folk Music Awards. Enthusiastic grandmother, kayaker and composter, Valley lives on Protection Island in the Salish Sea with her husband and long-time partner in life and art, musician Rick Scott.

To Give

My children bring out my best (and worst) qualities. I’m not sure if that makes me sound like a good or bad parent, forgetting that such judgements shouldn’t be made, but I know it makes me a human being. The resulting transformations and affirmations of self come about in two ways: the easy way, and the hard way.

Let’s start with the easy way, shall we.

The easy way was last night putting Penelope to bed. I’m fighting a cold, but she insisted on mommy’s presence and I know why. She is enchanted with our nightly ritual of oral story telling. As I laid downstairs on the couch, feeling miserable, but peaceful and resting, my eyes glued to the page of a book, she tugged away at my arm, “Come on mommy! It’s bedtime! You have to go to bed now! I need you!”

“Oh sweetheart, daddy’s going to tell you a story tonight.”

“No!”

“He’s going to tell you the story of the purple octopus.” Purple’s her favourite colour.

She considered this, and when Dan picked up the thread, playing along, she weaved her way upstairs and into bed. But sleep never came, and so I found myself by her bedside.

“Mommy, now can YOU please tell me the story of the purple octopus?”

Her poor daddy tried, but as though co-conspirators, Penelope and I huddled together waiting to hear the REAL story, the one her mommy would make up. I believe she was employing the same rationale Ariel uses when it comes to her lunch cesar salads. I wash and cut up two pieces of romaine lettuce which go in a square container. I then put one scoop of dressing in a separate container and Ariel mixes the two at school. Salad made, voila! If her dad makes her salad, following the exact same steps I might add, it inevitably comes home uneaten, the comment being, “mommy just makes it better.”

I realized, sitting there at Penelope’s bedside and making up the story of the purple octopus who lived deep down in the ocean and wrapped itself around the submarine Penelope was riding in because it wanted a hug, that I was completely delighted and in my element storytelling with my child. Penelope was equally enthralled, which only served to reinforce this notion I have of my third child being a kindred spirit. We get each other. Our personalities jive. I rarely find myself feeling anger toward Penelope’s behaviours because I understand her so well; I know exactly where she’s coming from. So there’s that, but also because it is easy to do what I naturally enjoying doing in the company of someone who adores and appreciates my doing it.

These are the moments of parenting when I don’t have to stretch myself to grow, I’m simply doing what I love best, being myself, and my children are benefitting. These are the moments that effortlessly evoke my best self.
Now let’s talk about the hard way we grow as parents. The lessons we learn from parenting by taking the long way around.

Often to grow we need to fail. We need to get it wrong so we can figure out how to get it right. Elyse’s hair has been one of those things we have failed at many times, but for which we are striving to get right. For as long as I can remember, my attempts to brush Elyse’s hair have brought on tears. And I’m not talking about a few tears. I’m talking about wailing, screaming, outrage. Not every time, but often enough that there’s a sore spot there. The mere mention of the brushing of her hair can bring wrath and meltdown city (as Dan and I call it). We have tried everything when it comes to brushing her hair. Different combs, brushes, de-tanglers. Mom or dad brushing gently right out of the tub, or when her hair’s dried, or the next morning; Elyse brushing her own hair, keeping it long or cutting it short, brushing more frequently or less frequently, trying to build in a routine, trying to brush at her schedule and pace to varying degrees of success. We’re finally at a better place with her hair brushing – she does it mostly herself, but we still have to help her do her hair. I cannot say that this screaming and crying behaviour from Elyse evokes the best behaviour from me. Of course it doesn’t! At a certain point, her tears left me feeling angry, resentful, and helpless. This has to get done! What do you want from me? I want to scream. It’s hard to admit when you’re a mother feeling like she doesn’t know what her child wants or needs. Thank goodness for siblings and insight.

Over the weekend, Elyse had her dance recital. I should make it clear to you that dance and music are Elyse’s life. She lives through movement, and in moments of tension, we often find solace and common ground through music and dance. Knowing full well I would be on hair duty for the recital, I took many deep breaths in preparation for the tears that would ensue in getting her ready to perform. Even as adults, it’s hard to break a pattern of thought and to think positively about a situation that once, or many times, has caused you emotional hardship. Burn me once…

Anyway, Elyse was a champ getting ready. She let me brush through her incredibly long hair with a comb after Dan did her tub, and she did an initial brushing herself. She staved off the tears that eventually rolled down her cheeks for as long as she could, but then they came, accompanied by short outbursts and wails as I ever gently worked her hair into two buns. Her tears made me feel bad. A dance recital isn’t a necessity in life, and yet I was putting her through this hair torture – for what? But to counter that thought, you can argue that nothing is necessary, and damn it, if my kids start something and reach a certain point they are going to follow it through. Tears or no tears.

I remained calm and composed in my role as hair dresser, though coursing below the surface was a long-standing annoyance over the responsibility and the difficulty of doing Elyse’s hair; the lengths I go not to upset her, the inevitability of her upheaval. On top of it all, I don’t particularly enjoy doing hair.

Ariel wanted to be in the room to watch Elyse get her hair and makeup done. Had it been me in her shoes, I would have bailed when Elyse started crying, but Ariel insisted on being in the tiny bathroom with us, and she was the one who comforted her sister better than I could with comments like “Your hair is going to look so pretty, Elyse!” and “You’re watching Teen Titans! Is that your favourite show?” Standing there, hairspray can in hand, I was amazed by how much Ariel had inside of her to give. She had more of herself to give than I did, of that I felt sure, and in that same moment, I lived an experience I have been writing about and talking about for years; that through her tears, Elyse was also giving all she had to give. She was at her max and that was it, there was no more. Expressing her frustrations about getting her hair done through her tears was all she had to give. I was giving all I had to give too, but I could do better. I could do better and be better by realizing that my child was doing the best she can, and that each of us only has so much to give. Myself included. I could be better by realizing that accepting the people you love for who they are, and for what they have to give, is what unconditional love is all about.

I realized I was setting myself up to fail by expecting that Elyse should behave the way I want her to, the way society would dictate, instead of just accepting her for who she is. Nobody willingly wants to disappoint their loved ones through their behaviour. She is communicating in the only way she knows how. And with that idea came the thought and true understanding of she is doing the best she can. I am too focused on do it my way – the right way – as the only way, when of course that is not true. Elyse, all my children, show me regularly that there is more than one way of doing things. I would be wise to pay attention.

While Ariel pointed the way through her shining example of unconditional love, it was Elyse who forced me to come around the hard way, who reached for that most sequestered place of my heart and called it forth by saying, here, even when it’s hard, this is what it means to love me.

Inclusion by Kari Burk

(The following is an excerpt from the book Snapshot of a Soul Place in the land of special needs, written and illustrated by Kari Burk, with much gratitude and thanks to the author for permission to share.)

“Are you a monster?”
he asked while climbing around
at the playground.
“No!” she said with
a laugh.

Is that cat green?
Why is it green?
I’m not used to seeing a green cat.
Why does it have two different eyes?
Eeek! I’m afraid of it!
Is it a monster?
Where does it come from?
What happened to it?
I don’t know if I can be friends with it.
Yikes! That cat seems weird to me!

I created this Green Cat painting in response to Mielle being innocently asked by another child,

“Are you a monster?”

The love, care and acceptance shared within families and friendships
sometimes has to carry the weight of its opposite,
which is exclusion.

I remember how painful it was for me when Mielle was younger and some
kindly person would have to tell me that she couldn’t participate
in a class or program because she required one to one attention.
I would climb into the car and weep,
and Mielle, oblivious to the problem, would ask me, ‘Why mom?’

In her teens Mielle started talking about ‘kids’ eyes’ when we were in
a grocery store or park. I realized she was aware of children staring at her
because she is different and on occasion this would bring her to tears.
We’d suggest not letting it bother her,
that kids stare because they’re curious
and maybe she could say hello and make a friend.

But her feelings were getting hurt because she felt unaccepted.
She thrives on social interaction and is highly sensitive to failure.

I first saw a person with Down syndrome at eight years old in the corner store
and I did the exact same thing, I stared for a very long time.
The storekeeper was kind enough to notice my bewilderment and talk to me
about this special person which helped me not be afraid.

Children who are exposed to the world of special needs
are more comfortable with differences. Inclusion in whatever way possible
is extremely valuable for all concerned.

I try to stay positive for myself and Mielle but there have been many times
where I too have cried when a wall suddenly appears.

I have to look to my skills and practices to create a door or window in this wall,
to see it as an opportunity more than a struggle,
to move forward with good choices
and keep rowing the love boat gently down the stream.

Author and illustrator Kari Burk is a multimedia artist and landscape gardener who operates Muddy Tutu, Organized Grime and Garden Art in Castlegar, BC.  A graduate of Emily Carr School of Art and Design.  She’s a painter, poet, performance artist, musician, dancer, cartoonist and curator.  She has self-published fourteen chapbooks of poetry and exhibited and performed throughout BC.  Her art is available for sale and by commission.  Kari lives on a Kootenay mountaintop with one of her greatest works of art,  her daughter Mielle.

On Writing

I sat at my desk chair this morning, my mind churning with thoughts, ideas tossing and turning, waiting for that one to pop up to the surface and answer my question; to reveal the topic of the day’s writing like a future foretold by a magic eight ball.

Well, the idea’s arrived and it’s here to stay. The topic of today’s blog post is… *drumroll please!* Writing – yeah!
Writing about writing, that’s so meta, right?

Writing, writing, writing, where to start? To write well, one must read well and often. I just ran upstairs to count the books on my nightstand, which frankly, is looking a little out of control. Thirteen books await my eager eyes. I know I have another one on the way, and a notification from the library popped up that I have another book on hold available to pick up. One of those thirteen books is a hiking guide, disregard that one (unless you’re into hiking, then pick up a copy of one of Nicola Ross’ Loops and Lattes books for local hiking in your area). There were also two notebooks on my nightstand, giving us a grand total of fifteen books. One of those notebooks is a journal where I jot down thoughts, occasionally chronicle my days like in a diary and insert quotations and important lines from books I want to come back to, or remember, or use in my own work later. The second smaller notebook is lined with the names of books I have read. Two and a half years ago, I gave myself the challenge of reading one hundred books that year, and I’ve been documenting what I read ever since. This practice has come in handy! Listing books read has prevented me from reading the same book twice, and reminded me of that amazing story with the title or author that’s slipped my mind.

The book I’m currently reading, Cherry by the great memoirist Mary Karr, isn’t even on my nightstand. It’s right in front of me. I took it with me on the drive to drop off the kids at school this morning and then it followed me into the dentist’s office – just in case. You never know when you might have a spare moment to read and I like to keep my books close (read: bibliophile, much).

Of the thirteen books I’ve mentioned, a few are fiction, several are memoir, one’s for my book club, I believe there’s an anthology in there, a book profiling Canadian authors, then last but not least, there’s a book about writing. At this point, I have to mention Mary Karr’s book about writing, The Art of Memoir, as one of my favourites on the subject, and which has lead me to more of her work (Cheery, Lit). Steven King’s On Writing: a memoir of the craft is also brilliant. I pay attention when other writers whose work I enjoy mention their go-to writing bibles. Recently, Betsy Lerner’s The Forest for the Trees came to me this way after Canadian author Lindsay Wong (The Woo Woo) lauded the book in an interview. Its lovely cover is sitting top of the pile, and is inscribed with this promise: An Editor’s Advice to Writers. Yes, please! Editors are almost god-like in the writing world; they wield an indeterminable amount of power.

Me (lowly writer): Hello there Mr. or Mrs. Editor Sir, uh or Mam, won’t you please take a look at this manuscript and consider publishing my book?
Editor (for publishing house): HA-HA-HA! (evil laugh)
Me: Okay, I’m just going to leave this here, and hopefully you’ll take a look at it.
Automated message reply: Thank you for dropping your manuscript, heart, and soul, into this slush pile. Please take a seat and we’ll get back to you shortly (in six months to a year).

You guys, editors aren’t evil – not at all! But they certainly hold power to make decisions about who gets published and who does not. I love reading books written by editors who provide honest and direct feedback about what gets published and what doesn’t. A book I love for this exact reason is Pat Walsh’s 78 Reasons Why Your Book May Never Be Published & 14 Reasons Why it Just Might Be. I mean, come on! What a title. For any aspiring authors out there, it’s like, just give me the fourteen reasons! And fingers crossed your book doesn’t fall under the 78 reasons why not. I tore through that book, then accidentally stole it from the library after I returned it with a pile of other books, was sure that I returned it, noticed it was marked as unreturned in my library profile, told them I returned it and got them to remove said unreturned status. Two months later I found 78 Reasons tucked onto one of my book shelves, the cheeky devil, and I took this as a sign that I was meant to keep it. Okay, okay, I probably should still return it and buy my own copy, and one day I will, but in the meantime, I’m sure they’ve easily replaced the rogue paperback with the more than twenty dollars in late fees I’ve paid over the years. Now I’m sounding bitter – I’m not, really I’m not. I love and respect my library! Somebody’s going to send me a nasty note about this.
Maybe what I will learn from writing about this experience is that what happens in the library, should stay in the library. You guys don’t need to know all my dirty book secrets.

What I can tell you, hush, hush, is what I’m currently working on. Just a snap shot. This is kind of a faux-pas in the world of writing. In On Writing, Steven King urges writers not to do this. Talking about your writing and sharing pieces of your writing before it’s actually finished is really just a form of distraction and procrastination – touché, King. But when you’re writing a blog about writing, I think then it’s okay.

There’s my book – My Book, book – the gleaming manuscript, polished and waxed, titled and sent out into the big scary world of publishing. Fingers crossed I hear something soon (likely in the next six months, I’m told). That’s all I’ll say about that. Until it’s published, I’m “working on it”.

There’s a new book I’m working on too, but now, you see, all of a sudden I’m feeling shy. Is it because I’m worried someone will steal my ideas? Elizabeth Gilbert talks about this phenomenon in her book Big Magic, how ideas fly in, land in our heads, and while some take up residence, others move on to more accommodating abodes, homes where they can be fully appreciated. There’s a scene Gilbert writes about meeting her new friend Ann Patchett – celebrated writer and book store owner – for the first time backstage at a speaking event. Both American authors, completely unknown to each other before this moment, coming from opposite ends of the country. Naturally, the topic of, So what are you working on? comes up, and they both realize they’re each deep into the process of creating a fictional romantic story about the construction of a bridge taking place in the heart of the exact same Brazilian rainforest. What are the odds? The point is that ideas don’t really belong to us until we make them our own, and that in writing, even if two authors write about the same thing, you may approach it a million different ways. Besides, the book I’m working on isn’t a new concept, it’s been done, just not from the angle I’m going to tackle it.

So, I’ll tell you a bit about this side book project I have on the go. It involves getting rid of something every day and writing about it. I started this project last August after my family of five spent a week at my aunt’s cottage with nothing but the bare essentials: clothes and food for the week, the beach, the sun overhead and each other. There was a laundry basket filled with toys too, but the kids didn’t touch it. And we were happy, blissfully happy. It made me realize how living a life with less could be so meaningful and fulfilling, and I wanted to bring that feeling back home into our daily lives. So far, let me tell you, I cannot believe how much stuff we have to give away. I’ve sold things on Facebook groups, through Kijiji, in a garage sale, through porch pick ups, at reuse shops and to friends. Likewise, I’ve donated items to drop off bins, the Salvation Army (more times than I can count), at Wastewise, posted items for free on Facebook and passed things off to friends and family, and STILL there are more things we really don’t need or even want kicking around. I don’t believe this is a problem unique to my family. I’ve thrown many items into the trash, which tells you something about the things we keep even though nobody would want them or use them – think, dried up markers for examples.

This year I’m waging a war on stuff, and though it’s mostly a losing battle (getting rid of stuff makes you realize how much more is regularly coming in), I’ve had fun discovering and writing insights down along the way. Will this be my next book!? Maybe. I have so many other competing ideas (more on those another day), but if I’ve learned nothing from writing my first book let it be this: you have to be committed. To liken book writing to running, producing a finished manuscript is akin to finishing a marathon. Both take dedication, sustained effort, long hours of training, failure and even injury (!), but it’s the process you look back on fondly once the race is said and done. Whether this project becomes a book or not, the practice of daily writing has been worthwhile, in and of itself, and I highly recommend picking your own daily writing practice project for no other reason than the sake of the writing. Also, because nothing in your life is ever wasted. I repeat, nothing in your life is ever wasted. As a writer, everything is material.

I promised myself I would enter more writing contests this year because that would mean I am doing a lot of – surprise, surprise – *writing*. I’m currently working on two contest entries: one for Fiddlehead’s creative nonfiction contest, the other for ROOM’s creative nonfiction contest, and a third piece for contest unknown. As I write this, I’m remembering that contests have DEADLINES. I just checked, and I only have three days left until ROOM’s deadline. Eek. In completely unrelated news, I have to go. Seriously – but first – I want to share one last writing-related challenge I’ve latched on to. An idea that’s found a new home. You could use this strategy in any area of your life where it might apply. I’m working toward one hundred writing-related rejections. You heard me right. It’s well documented, but maybe less well known outside the writers’ circle, that successful writers, and even their masterpieces, are often rejected dozens to hundreds of times before they find their success. A comedy writer, whose name has escaped me, took this to heart, and decided she would aim for one hundred rejections. Along the way, she was accepted something like 63 times, and ended up getting published in places she wouldn’t have dreamed of trying before. I love the idea! I’ve got my own “on my way to success” board set up, listing all my submissions on one side, and rejections on the other. I have a long ways to go, better get to it!

If you’ve decided to adopt this reframing of failure strategy as I have, then please take these words to heart. Happy writing (or whatever it is that you do) and good luck practicing! I wish you many failures.

Falling from Grace

Children are full of grace.

When I was a child, I was a free spirit for a while, picking up friends and dropping them off as I went. Books were my best friends for a time, but then something clicked and it was friends that meant the most to me. Friendships were the stuff I breathed. Making connections with other people remains important to me; it’s important to all of us. You could argue it’s why we are here.

I recently set up a play date for Elyse with a friend in her class after she was invited to the friend’s birthday party, but was unable to make it due to the timing coinciding with her dance recital. With three children’s social and extra-curricular schedules to coordinate, a conflict in the past may have meant I would have left it, but as Elyse gets older, it’s becoming even more important to me that she not miss out on this social opportunity. A chance to play with a peer and foster a friendship.

When a friend invites her to something, we pay attention.

More and more frequently, in attending conferences and reading the stories and being given advice by the generation of parents who have children with Down syndrome who have gone before us, I’m repeatedly hearing the importance of teaching social skills and supporting social development. Generally speaking, social skills are thought to be a strength in most children with Down syndrome, but of course, every person is an individual. As my friend Debbie Boycott writes in Common Threads, “As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.”

I remember saying to Dan when I was pregnant with Elyse that just because she had Down syndrome didn’t guarantee that she was going to be a good person – that would be up to us to teach her. He laughed and teased me saying, “yeah, she’ll probably be a jerk.”

“Maybe if she takes after you!” I lovingly jabbed back.

Elyse’s little friend, who we’ll call Marcie, arrives in the afternoon. We were a bit late finishing lunch, so Elyse hadn’t yet finished her pizza. Still, she abandoned her slice to see what the commotion was about at the front door, and she instantly recognized Marcie and gave her a kind welcoming hug. Almost immediately afterwards, all of the children were outside in the backyard, with Ariel, the oldest, taking the lead; Marcie and Penelope not far behind, and Elyse – rushing to get her shoes on – the last one out the back door. Though Elyse lagged somewhat behind, the kids were eventually all outside, all of them together and somewhat playing together. Dan and I smiled at each other weakly, silently each worried about how long this might last.

What I’ve noticed about Elyse is that she likes to do what she likes to do. She often chooses to do what feels good in the moment, and chooses not to pay attention to social conventions. Being able to be in the moment, and fully enjoy what you are doing is an amazing skill, but it doesn’t necessarily translate into being a good friend, unfortunately.

As the kids came back inside, Elyse slid back to the table and her pizza, and Marcie pulled out some craft supplies she brought along with her and sat at the same table. Ariel squeezed in beside Marcie, and the two of them sat colouring, nicely sharing the same page of the colouring book. Again, this was fine. Everyone was engaged and together, though what I really wanted was for Elyse to be playing with her friend.

Dan and I thought it would be best if he were to disappear with Ariel, the big sister with a big personality, to give Elyse a chance to shine and play with her friend. Dan would take Ariel along to the barbershop with him while he got his hair cut, and I would stick around to watch the three girls.

With everyone now up from the table, craft time over, I watched to see what would happen. The girls were looking at toys in the other room, so I went upstairs to fold some laundry and give the kids space. Elyse followed me up. I put on some music so Elyse could dance (one of her favourite activities), but Marcie wasn’t interested in doing that so she wavered between Ariel and Penelope’s room, each of them happy to engage with her. Elyse would not have been happy if I were to turn off the music and suggest she play with Marcie. “Play” can be a difficult, abstract concept for a child, even though we want to believe it’s something that happens naturally.

As it were, Elyse could have cared less about what Marcie was doing. She was too busy doing her thing. While this sounds good at first glance, let me tell you that it was not a good feeling as her parent.

Gauging that Elyse was in a solitary kind of mood, I quickly assessed that the rest of the play date wasn’t going to go well. I decided to take the kids to the park, where everyone would be on an equal playing field and could play at their own physical ability level, but I wanted Dan and Ariel to come too. I was suddenly feeling less confident in my ability to successfully support this play date alone. I pleaded with him to stay and come with us to the park, but Dan was having none of it. “You’ll be fine! We’ll only be gone an hour.” He still thought it would be better if Ariel wasn’t around to interfere.

Outside on the driveway, we readied ourselves for the park. I planned to take the stroller, just in case Penelope got tired, but Elyse insisted I bring the wagon, whining and complaining loudly in front of her friend. I was all smiles and cheer and super accommodating, trying to avoid conflict at all cost with this little friend in tow. I wanted the outing to be fun. Elyse and Penelope fought each other trying to get into the wagon, typical sibling spat, which wasn’t helping matters and only served to further identify the elephant in the room: Elyse completely ignoring her friend. In the end, Marcie asked if she could be the one to pull the other two in the wagon, so she did. I wanted nothing more than for Elyse to walk beside Marcie, hold her hand, say something to her – anything. But Marcie didn’t seem to mind, and chatted with me amicably while Elyse sat sullenly in the wagon.

At the park, Elyse and Penelope immediately gravitated toward the swings, and that is where both of them remained for most of our time there.

Does it matter that I really wanted to see my daughter playing with her friend? As long as they’re happy, but what if you’re not, because you know what it means?

Marcie played using the entire play area, as Ariel would have. She climbed and called over to me to show me what she was up to, and I called back to her in between shouts from my two children to be pushed “Higher! More!” Penelope, truth be told, was on the brink of a complete toddler meltdown, having skipped her nap, and Elyse, master imitator, copied her every word. Under these conditions, it became near impossible for me to try and get Elyse to do something else willingly, where her friend might join her, with Penelope in tow.

I can say, on the one hand, the outing to the park was successful in its own right in that each child seemed to have enjoyed themselves, more or less; but on the other hand, my goal, and the point of the play date, remained unmet because they did not have fun together.

Penelope cried most of our walk home, but thankful Marcie, being a big sister herself and full of grace, understood that little kids cry and didn’t let it bother her. When we got back there was time for a quick snack, then Marcie was on her way.

While I’d tried to shield myself from my own stormy feelings that were rising up, like holding up a flimsy umbrella when the rain is blowing sideways, there was nothing I could do to protect myself from the deep puddle of emotions I stepped squarely in and I was left sitting there muddy and soaking wet.

Why had Elyse ignored her friend?

What skills did we need to teach her in order for her to be able to be gracious with a friend who’s come to play with her?

What have we done wrong? I feel like a failure.

While I struggled emotionally to process these questions and dawning realizations, Elyse and Penelope started fighting over their snacks while sitting at the table, their little hands clawing at each other. This was too much.

“STOP,” I screamed at them. They froze, mid-swipe; Penelope’s bottom lip quivered. I burst into tears, head in my hands. My outburst filled the space in the room.

Dan and Ariel arrived shortly after, thankfully, but I remained pained and terribly sad from seeing my middle daughter struggle with a skill that comes so naturally and effortlessly to my other two. Academic skills are important to me, sure, but being a kind and generous person? Learning reciprocity and being a good friend? Acquiring and demonstrating these skills are non-negotiables.

If there’s one burst of gleaming hope to be taken from this story, it’s that I have seen Elyse play with other children beautifully with my own two eyes several times. Every time I am filled with pride. When she wants to, she knows how to play.

Dan and I know we have some work ahead of us as parents. We know there needs to be a conversation with the school where Elyse spends most of her time. If there’s one thing I took away from the Canadian Down Syndrome Society’s conference in Victoria this past year it’s that inclusion isn’t just about being in the same room as other kids, that’s a first step, but to take it a step further to TRUE inclusion it’s about building a sense of community where everyone belongs. For Elyse to be able to build friendships at school, she needs to feel like she’s a part of the community by being engaged in activities WITH her peers – not simply alongside them. As her parent, I need to make sure that is happening.

I’m often hesitant to write about negative experiences with Elyse because, as an advocate and being the person that I am, I like to focus on the positives, and to be sure, there are many. But to only see and report on the sunny side of life would be to do a disservice to Elyse as a whole person. Human beings are complex. We will continue to plant and water the seeds of friendship, bring light to where we are, shower her with support, and with time, I know in my heart Elyse will continue to blossom. As will I, as her parent.

 

Author’s note: In the hour after I finished writing this piece, still carrying around the emotional baggage and mulling over points, a friend said to me at the gym, “you’re looking strong!” I was feeling the opposite, quite weak, which is telling in that how we’re feeling on the inside isn’t always evident based on outward appearances. It’s like looking through the window on a bright sunny day, blue skies overhead, then stepping outside into the chilly air.